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Posts Tagged ‘asperger syndrome’

…MAKE LIGHT WORK! If I heard that once I heard it a 1000 times …one of my Grandmother Sadie”s standards. To this day that may have been her BEST GEM! There were SOoo.. many to choose from! She was a sunshine spreader…and I TRY, to follow suit. However, with all these roadblocks …you tend to FEEL a little STORMY at times. That is why WE NEED that support system. Life with the challenges that autism and asperger syndrome bring can be chaotic! On top of…YOU KNOW the ..NORMAL CHAOS !!

We need many hands…to make light work! Our kids are more demanding than the average bear, and THATS ON AGOOD DAY. When everyone is in the book but, not on the same page. Its hard to finish each days story! This is why so many hands are needed to help. Constant prodding and reminders day in and day out can be EXHAUSTING for BOTH prodder & prodee!! Its a full time job on top of a full time job.

So when you are blessed with an understanding and enlightened family…You have a SUPPORT net! Many hands embracing an individual that needs full-time task management. It is a tall order, no a huge order. Like TEAMWORK. Really ! Rotation is KEY~ 1 player CANNOT do everything! We all Know what happens when someone is overworked. THINGS GO WRONG. So a support net is cast. To spread out the…MULTI LAYER~”Task- Managing.”

Typical Parents don’t have this problem after their kids reach a certain” self- sufficiency.” With age …their AUTONOMY kicks in and they are OFF TO THE RACES. So to speak! Gone with their Friends to movies, sports, clubs etc … KIDS are BUSY! Thats when we get busy as well! Thats how families work…this one has that, this one goes here …so we will cover that. Utility Players…covering all the bases making sure all the plays are made. Now… picture this : one or two of your players is on the DL LIST permanently. However, those players remain on the field and the team carries on.

Working around obstacles. It’s what we do. On an on-going DAILY BASIS! The guys at ReasonTV were asking me about all that today. What it is like to be a parent to an autistic child? THE ULTIMATE QUESTION!! It’s everything you could possibly want and its everything you could not possibly want. A CONUNDRUM!! We ALL KNOW the only constant here is that these individuals are THE PUREST ON THE PLANET! Free from peer pressures free from stigmas and materialism.

So lets use our MANY HANDS and EMBRACE these amazing individuals…throwing out that SUPPORT NET! With all of us pitching in to “promote friendship through common understanding!” Once the UNDERSTANDING is more UNIVERSAL we can stretch that net. Unfortunately folks our ranks are growing …and as the years move on we will NEED A LARGER NET. To help us MAKE LIGHT WORK!

I cannot ADVOCATE “story-boarding” enough. NO… it is not a terrorist’ way of forcing you to listen to stories until …you talk! lol ! It’s actually a way to CLUE-IN our VISUAL THINKERS! Autistic individuals are operating each day on such different planes than “typicals.” They see or don’t see the world in such a different light! Typical people are usually in such a rush…we make alot of quick assumptions. While we are missing… many fine details!

Speaking of “FINE DETAILS” brings an awesome person to mind! Marshall Fenig ! Have you heard of him? Well, if you have a NON-VERBAL visual thinker… Mr. Fenig will have some tricks for you! You should look him up! Leroy Haynes Center had him as a speaker last year! I’m hoping for A SEQUEL!! His work with STORY-BOARDING is brilliant. He will customize the pictures for each kid. He had an awesome array of colorful examples he has created. At the Store, at the Dentist, in a Restaraunt and so on and so forth! Social situations MAPPED OUT for our kids. Our world expects so much from them, that they are just not PROGRAMMED to give. These SOCIAL STORIES help!

He has the BEST PHILOSOPHY I’ve heard! “TEACHto theREACH.” So Simple. So Profound! Yet that concept can be easily over-looked by so many! If the concept holds NO IMPORTANCE to the individual… how can we expect them to engage and LEARN? Back to the word ASSUME. We as typical brains…are so arrogant that we tend to think everyone’s mind works the same “like ours.” If someone is doing something you don’t do…then THEY are OFF? Is that the MINDSET that is prevalent out there when it comes to autism and asperger? Well, it will be nice when people start taking the time to learn the fine details before they make their assumptions! Think outside of YOUR BOX & HOP IN …THEIRS !

Maybe people should RE-THINK… who ISON and who IS OFF!? Reminds me of the saying…”The lights are on but, no one is home!” Typical brains have ALL THEIR LIGHTS ON. In my mind that means it is up to people with an “advantage” to show deference to individuals with the perceived DISADVANTAGE! Very easy to do…just keep reading my blogs!! I am STORY-BOARDING it for you!!

Marshall Fenig taught me to CURE Wyatt of tantruming in RESTAURANTS! All these kids need to know, are the facts. Wyatt was really having a hard time …WAITING. He does’nt color the kids menu. Heck he wont even take a look at it 9 times out of 10. So generally I come equipped with magazines & a FAV TOY or 2! When that did’nt work someone HAD TO take a walk with WYATT! Right in the middle of dinner! NOT FUN !

When we were made to realize that WYATT NEEDED to VISUALIZE the scenario it became so CLEAR! So SIMPLE! STORY- BOARDING! Once Wyatt was “given the script” of the restaraunts “chain of command.” He was ABLE TO WAIT! He understood all the steps. #1-ORDER IT,#2- THEY COOK-IT, and when its done…#3- THEY BRING IT! Finally everyone’s favorite #4-YOU EAT IT!! WELLA! It works well FOR MOST SITUATIONS! Give it a try and I’m betting you can save those “WALKS” for AFTER DINNER where they belong!

Our A-Leaguers are FEELIN IT ! The BUDDIES, The COACHES, The FAMILIES…WE are ALLFEELIN IT! & What a good feeling IT IS!! It had been so long since I had been in a dugout, I had forgotten! FORGOTTEN?!! How I could have ?!…I’ll never know! Guess all these years in the “trenches” with this SYNDROME! You become a little weary…AUTISM is hard for the individual and even harder for the family! However, a little DUG-OUT “action” is going a LONG WAY toward healing that!

The feelings that go down on a baseball DIAMOND are transformative! Anybody that does’nt believe that…come on down to SAN DIMASany given SATURDAY and watch the A-LEAGUE!! I firmly believe DUGOUTS are CHARACTER BUILDERS!! The game of baseball takes SUCH TEAMWORK!! As does AUTISM & ASPERGER SYNDROME!!! Our individuals RELY…on networks. NETWORKS of caring individuals…understanding, informed INDIVIDUALS. A Team mentality has always been pervasive ON THE SPECTRUM!

Teams that consist of Parents, Grandparents, Aunts, Uncles and Cousins. Notto mention the real TEAM LEADERS…The SIBLINGS! We are “in the dugout “DAILY!! When we are not in the dugout we are driving to the rest of the team! A vast number of therapists and their appointments, social skills groups, Drs. visits and on and on! You could add as many to the TEAM that you or the state can afford!! The net you cast covers it ALL…or so you think!

NOW, with each and every BASEBALL OUTING…I am seeing something I have not seen before. Autistic kids “lighting-up” over seeing their FRIENDS! This A-LEAGUE is awesome! This…ON THE SAME TEAM “FEEL!” I have no doubts that this will carry over to everyday life. These weekends in the DUGOUT are pointing our kids in the right direction. On theHIGHWAY toFRIENDSHIPS! The feeling that they don’t run those bases alone, their daily struggles are all WORTH IT! As our players round the bases knowing that their team is in the dugout rooting and waiting to SLAP FIVE!

Their THIRD TEAM!!! Not Mom & Dad or their Siblings…Not The Teachers or varied Therapists. Their FRIENDS ,their comrades the ones they are IN THE TRENCHES with! As they navigate their way around Our National Pastime with THEIR TEAM! Building SKILLS,HEART and CHARACTERin The Dugout!

…My WYATT’SBIRTHDAY! Coincedentally also the 1ST day of AUTISM AWARENESS Month. Funny how things work out sometimes. The year Wyatt was born will be just like this one. Wyatt’s Birthday… on Thursday April Fool’s Day, followed by Easter Sunday. I knew Wyatt was a special boy instantly! So wonderous, to see your “freshly-cooked” baby’s lip curl up …in response to your familiar voice! His Apgar (reflex) scores were, as they say…”ALL GOOD.”

But, after a few years that went…”ALL WRONG.” Which is the most confounding part of this whole “AUTISM-THING.” This thing you were’nt ready for. This thing that no one can really explain to you. Where it came from…where it’s going. What to do about it. Funny when you are awaiting motherhood, you are innundated with literature. This is what you do, here. This is what you do, when. Everyone is there with advice and anecdotes! Then when you are hit with AUTISM…its as if EVERY BODY GOES BACK INTO THE WOODWORK!

Alot of that advice DISAPPEARS… into thin air. Mainly because there just was’nt any. I am sure hoping that, that is no longer the case! We have come a long way in the knowledge department. Yet people still don’t know what to say. I will tell you, I am so TIRED of ONE PHRASE. It is probably the one thing that everyone can “PARROT” about AUTISM. Yes….Ladies & Gentleman the most worn out saying of them ALL…”EARLY INTERVENTION IS KEY.”

People CLING to that phrase TOO MUCH! I’m sorry, I just had to say that! Now …I do feel better. That has been on my chest for sometime now. My 1st and most OBVIOUS problem with the phrase is that intervention CANNOT occur EARLY for someone with “regressive autism.” When things are going along” normally” you have nothing to intervene. More and more I am hearing about, LATE DIAGNOSIS’ Perhaps…mis-diagnosis’? More confusion? What a surprise! Afterall this is AUTISM we are speaking about!! RIGHT?!!

I really want people to knowSO MUCH MORE about AUTISM than that one phrase!! Seems like everyone is just stuck on that phrase… that just hangs there. ” Oh, so you mean~ if you get early intervention …everything will be fine?!” I really believe… that the general population is “buying that.” Unfortunately its because thats all anyone ever says. EVERY single NEWS ITEM about autism or asperger syndrome will state that. That MOST OBVIOUSFACT.Of course early intervention is the key, as it is with cancer, diabetes and everything else that can “GO WRONG” with a person. DUH…you want to catch “IT” as SOON AS POSSIBLE.

Dare I be so bold, as to ask for some ~ NEW...”Catch Phrases” and “Sound Bites” for that “3 minute “NEWS ITEM I mentioned earlier. Autism and Asperger Syndrome could use a new message for the masses…I am PUTTING THAT OUT THERE! Let’s not WASTE anymore time beating the early intervention horse! Everyone KNOWS THAT ! Put it in “The LITERATURE” in big caps!!!

In 2010 we need to move on from that and surge ahead! Blazing some new trails. Let’s tell the general pop. something “NEW about US.” SOMETHING USEFUL that helps us understand how to co exist in this BIG BEAUTIFUL WORLD! Big enough for ALL OF US!